Born and raised in Rochester, New York, Lu Randall earned a BS in art therapy and art education from Buffalo State College and a master’s in rehabilitation counseling from Wright State University in Dayton, Ohio. From there, she relocated to Philadelphia, where she ran a day program for adults with chronic neurological damage. In the early 1990s, she moved to Pittsburgh, where she started working with the parents of children with autism while raising three sons with her husband, Bill. She now leads an organization that helps people with autism and their families access support, information and resources. ABILITY’s Itto Outini chatted with Lu about her on going work.
Itto Outini: Can you start by sharing a bit about your organization?
Lu Randall: My pleasure. The organization’s called Autism Connection of Pennsylvania, and we’re an affiliate of a large Pittsburgh disability nonprofit called Achieva We have about 20,000 subscribers to our email newsletter, and maybe six or seven thousand followers on social media, and we focus on support, referrals and education. So, someone might call us up and say, “I have a daughter who’s autistic, she’s got this or that problem,” and I’ll refer them to someone who specializes in whatever she needs. Therapy, education, vocational training, all kinds of things. My staff and I take about 270 help requests every month—through texts, email, Facebook, websites, phone calls, etc.—however you want to connect with us, we’ll make it work. That’s what we’re here for.
Itto: What initially sparked your interest in advocating for people with autism?
Lu: My dad almost certainly had autism, although it was a self-diagnosis. He was a brilliant satellite radio engineer, but he needed a lot of structure in his life and always struggled during social interactions. I used to help him with anything involving other people: calling places to see if they had the parts he needed, going out to pick things up for him, those sorts of things. So, I got used to that from an early age.
Itto: And how has your understanding of autism evolved over time?
Lu: I’d say it’s broadened and deepened as I’ve met more people with autism and gotten more education. I’ve witnessed a lot of diverse experiences and come to understand how that diversity’s grounded in neurological differences. I don’t have autism, but I do have PTSD, so I’m not neurotypical, either.
Itto: How does that affect you?
Lu: It makes me kind of hyper-vigilant, but at the same time I can be really bold as an advocate because when we survive life-threatening events, we can sometimes become braver about other things. I’ve done therapy and had a lot of support over the years, and that’s enabled me to move on from being a victim to being a survivor, and then to being a thriver. I think it helps me connect with others who are different, too, even if it’s not the same difference. And I think it’s helped me raise my sons to be more aware of those differences. For example, one of the kids in the neighborhood where they grew up is autistic, and when they were younger, they would play with him, and he didn’t have any spoken language, so they learned to read his body language and behavior. Once, I remember, at dinner, my older son asked his brother, “Did Adam speak any autism today?” And his brother said, “Oh, yeah!” which showed me they’d heard me when I said he just has another language and accepted that.
Itto: You also do public speaking, right? And training sessions?
Lu: I’m not speaking in the public schools right now because of the pandemic, but I’m still working with a friend of mine, City of Pittsburgh Police Lieutenant Eric Kroll, leading trainings for law enforcement in the city and surrounding counties. One of the board members at Autism Connection, attorney Bill Ward, used to be a judge, so we offer justice system training and legal education, too.
Itto: What are you focused on now?
Lu: Currently, breaking down the cradle-to-prison pipeline. We want kids with intellectual disabilities and autism to get accurate diagnoses when they’re young so they can get the help they need instead of having misunderstandings at school and getting punished, suspended, expelled, which might lead to even worse outcomes, homelessness, encounters with the police, etc. I think American society is still very much in denial about how much time and money we spend punishing people with disabilities for their disabilities.
Itto: What do you do to address that? How do you challenge people who are in denial?
Lu: Oh, I’m a terrible dinner guest! I’ll show up with a casserole and a lecture, like, “People with disabilities don’t just go to jail because they feel like it, you know! That’s what happens when you don’t have access to food and housing!” I talk about these issues all the time. I make people listen.
Itto: Can you elaborate on the part about going to jail, please?
Lu: In the US, people with developmental disabilities like autism are incarcerated at a much higher rate than most people would ever imagine. I’ve been working in my community for a long time, and I started with children, so I’ve gotten to watch a lot of them grow up and deal with different situations, and I’ve witnessed how, whenever anyone acts a little bit differently, there’s always someone who calls 911. From there, things can easily spiral out of control.
Itto: What’s the relationship like between the incarceration rate and the crime rate for persons with developmental disabilities?
Lu: Totally divergent. People with developmental disabilities are much more likely to go to jail, but they’re also much more likely to be the victims of crime than the perpetrators. Even when they do get involved in criminal activities, it’s usually because someone else manipulated them. People with autism, for example, tend to be very honest, trusting people, and they expect the same from others, and nefarious people take advantage of that sometimes.
Itto: And that’s why they’re more likely to go to jail?
Lu: That’s part of it, but there are other factors, too. Sometimes, people with autism make social errors, and people who don’t know about autism, especially when they’re police officers and trained to identify threats, read those errors as suspicious behavior. People with autism also struggle with communication, and our criminal justice system has, let’s say, narrow standards for what they deem credible. Someone with autism might be trying to give testimony, for example, by saying something like, “He hit me. Last Tuesday. It was Sean. He did this to me,” and the detective comes along and shoots it down: “That’s not going to hold up in court.” I’ve got tons and tons of victims who’ve come forward and communicated, which is already very, very hard, and then someone tells them they’re not credible. It’s destructive, and it’s sad.
Itto: What can be done to change that?
Lu: These problems are rooted in silence and stigma. The only cure I know of is more education. I’ve seen powerful people—judges, for example—decline to ask if someone has a developmental disability because they don’t want to hurt their feelings. I understand it’s motivated by compassion, but it only reinforces the stigma. It implies that having autism or whatever is shameful or bad. The more we talk about disabilities, especially the invisible ones, the more we break that stigma down.
Itto: What do you think can be done to combat stigma for people with invisible disabilities?
Lu: I’m a strong believer in science. I love teaching people about neurological differences and how they lead to different types of thinking. Sometimes those differences are even advantages. People with autism have extra nerve cells in their brains, which can boost their memory and creativity and let them do amazing things, like memorize the entire periodic table, but sometimes it also causes brain “traffic jams.” If you don’t know what that traffic jam looks like, you might think that person’s not intelligent, or maybe they have bad intentions, but really it’s just a different kind of processing. We need to give people time and space to process things in different ways.
Itto: Is that just for people with invisible disabilities?
Lu: No, it’s for everyone! Something people need to understand is that no two brains are the same, and with every difference, there are advantages and disadvantages. When people have autism, their brains get stuck with social interactions. But that’s normal. Brains get stuck all the time. Someone could choke on a carrot when they’re two years old, and then they might never eat carrots again. It might be something you’re born with, or maybe something that happened to you, or a combination. It doesn’t matter. The problem only comes in when someone’s different in a way that’s poorly understood by their community. That’s why education’s so important. I like to show people brain scans so they can see for themselves.
Itto: Do you have any ideas for how to better educate people about invisible disabilities?
Lu: Kids are very receptive, so that makes me optimistic, actually. When I was speaking at public schools, I would always start by saying, “I have glasses, and my eyes are connected to my brain, so I have a brain difference, too!” I might mention people who are hyperactive since that’s such a common diagnosis in the US, and pretty soon, kids will be raising their hands and shouting out, “I have this! I have that! I go to a therapist!” We’re taught to be ashamed of these things, but once you start talking about them, people start to feel proud.
Itto: You said you’re optimistic. In your opinion, are things already changing?
Lu: Yes. Slowly but surely. Since 1973, people with disabilities in the US have had the right to education. Usually, that means public education. So, a lot more young people are going to school with people who identify as having disabilities. I think that’s having an effect on people and communities. Even when I’m talking to police officers, the younger ones are usually much more comfortable and receptive. Once I get them talking, they’ll open up and tell me things like, “Oh, yeah, my old boyfriend was autistic!” or, “My brother’s wife has autism.” That’s helping to break down the stigma—though of course it’s far from gone.
Itto: What do you think about media representations of people with autism and invisible disabilities?
Lu: There’s a lot of media coverage, especially TV shows that are fiction, where someone has autism, and it makes them a genius, and they have a really high-level career. That story sells toothpaste and cars, which is what TV is for, but I don’t think it helps people really understand each other, or understand invisible disabilities.
Itto: So, on TV, it’s like a kind of toxic positivity?
Lu: You could definitely call it that. I don’t want to bash positivity—there’s value in positive representations—but they should be realistic representations, too. If something bad happens to a person, the first thing you say isn’t, “Oh, come on! Cheer up! Could be worse! At least it isn’t this or that.” That doesn’t help them process what they’re going through at all. It’s the same with the media.
Itto: Why do you think that is?
Lu: Most people with invisible disabilities are underemployed, which means they lack economic power. That’s why the media doesn’t like to pay attention to them. Then you have over-incarceration, which causes people with invisible disabilities to be even further marginalized. Those are the stories that aren’t getting told.
Itto: Why are people with invisible disabilities still underemployed if things are getting better?
Lu: It’s complicated. Some studies have shown that when people send employers their resumes, they’re a lot less likely to get hired, or even get an interview, if they say they have a disability. I think there are generational differences. People coming out of the education system nowadays have been around a lot of different kinds of people, so they have a lot less bias, but hiring managers tend to be older and maybe retain more stigma.
Itto: The US is a very competitive country. Do you think that might affect employment rates for persons with disabilities?
Lu: I think it depends on specific hiring practices. For example, in some sectors, applicants have to complete an online logic test. If they pass, then they take a programming language test. Then maybe something else. People with autism tend to do well on those tests, but then they struggle in the interview because it’s a social setting. Maybe they get confused because of small talk, maybe it takes them longer to process the questions, and the hiring manager ends up thinking they’re not intelligent, but it’s not about intelligence. Interviews just aren’t a setting where they tend to excel. That said, I do think we’ll eventually get more hiring managers who know about invisible disabilities, and that will make a difference. But that day’s not today.
Itto: Do you think there are any specific American cultural attitudes affecting persons with disabilities? If so, what are they, and how are they affecting people?
Lu: We put a lot of emphasis on people self-reliance. Kids leave home at 18, and poof! They’re supposed to be independent, but it’s a pretty lofty goal, if you ask me, for anyone to become independent at 18, especially in today’s economy. I know some people from India whose whole family lives together, all the different generations under one roof, taking care of each other. I think that’s the norm in lots of countries, but not here. In the US, I think we have unrealistic expectations. For people with disabilities, it can really take a toll.
Itto: Would you say that American families are less supportive of their children with disabilities because of that emphasis on self-reliance?
Lu: In my experience, American families are very invested in their kids with disabilities, but they don’t get enough support from society as a whole. For example, maybe their kid needs something—speech therapy, better nutrition—so they try to provide it, but they don’t have the money, they can’t get it covered by insurance, whatever. Then there’s not much they can do. I’m currently running a support group for parents whose adult children have disabilities and are incarcerated, and that’s probably the most emotionally strung-out group I’ve ever met. They’ve spent their kids’ whole lives trying to support them, and then they still end up behind bars, where they might get beaten up or punished any day, and where they can’t even see each other. It’s awful. The families are invested. Society doesn’t support them.
Itto: How could society do a better job? Are there things that could be done through NGOs?
Lu: NGOs, as far as I’m concerned, are already trying to do a lot of work that the government should really be doing. All the money’s in the government programs, so we end up fighting over scraps instead of using our time and energy to better support people.
Itto: Is that the only issue? Money?
Lu: I can work 24 hours a day, seven days a week, but I can’t provide housing for someone who’s stuck right now in crisis residential placement where he’s overstayed by five months. NGOs don’t have the money and resources to solve those big, societal problems. Can we influence policy? Yes. Can we educate people? Absolutely. That’s better than nothing, but there’s a lot more that we need to do.
Itto: What’s the way forward?
Lu: Hopefully the government will start doing more, but we can’t just sit around and wait for that. We have to listen to the people who’re affected by these issues. And we have to put more people with disabilities in leadership positions. At Autism Connection, I’m governed by a board of directors, some of whom have autism themselves. When I meet with them, I try to listen more than I talk. That’s the only way to know if my choices make sense, if our projects are helping.
You know, I’m having a really hard time these days with the notion of “inclusion.” I have ability privilege—for instance, I can drive a car, I have a job—and that means I have a responsibility to make sure people who don’t have that privilege still get a seat at the table. But the idea that maybe I’ll “deign to include you” is ableist, for one thing, and it leaves out the question, “In what capacity?” It’s not enough to give people seats at the table. For these issues, people with disabilities, especially people of color with disabilities, should be at the head of the table.
Itto: What does it look like when that happens?
Lu: I’ll end with this: I’ve got a friend, an autistic social worker—that’s how they prefer to be known, as an autistic social worker—and their name is Cori Frazier. They started a mutual aid Facebook page with a colleague for disabled people in Pittsburgh, which now has maybe 700 members. It’s intersectional and cross-disability. Someone can post something like, for example, “Hey, I need a trans-friendly gynecologist,” and someone else will give them a referral. If they say, “I’m autistic, I don’t know what to say on the phone,” or “I’m completely deaf, I can’t make phone calls,” someone there can help them make the call. Whatever you need, there’s someone there to help you. If they don’t know how to help, they’ll find someone who does. I think that’s what it looks like. That’s what we need more of.